Just officially diagnosed with RRMS
Hi fam, I’m Greg, live in Tennessee United Staes. Just diagnosed yesterday. Getting a Retinal scan soon, then will be starting 5 days of Infusions. After that, I’ll take the oral Methylprednisone. I’m nervous. Can anyone tell me what to expect? Thanks.
Hey @gmag44 I’m really sorry to hear about your diagnosis — it’s a tough moment, and it’s completely valid to feel nervous. I’ve been on two rounds of steroids myself (IV and oral), so I wanted to share a few things to watch out for: 1. hiccups - so avoid spicy food and lying down immediately after eating as this is a trigger. 2. Mood swings and emotional volatility - you will probably be experiencing very high highs and very low lows and it will be shifting almost in a matter of minutes - almost bipolar in fashion. It’s annoying but remembering it’s the meds will help you get through this. 3. Sleep issues - you will probably have a hard time sleeping so please try to take them early on the day between 7-9 AM so that you reduce this effect. I started taking some magnesium glyicinate before bed and it helped with sleep a bit. 4. Racing mind and thoughts - this is also annoying just be aware and it will keep you up at night. For me journaling all my thoughts helped and also watching some old Bob Dylan videos on YouTube. :) 5. Increased appetite- you will be craving food A LOT even when you’re full. It’s an unnatural craving I’d say. Unless you want to gain weight, my advice would be to get rid of all the junk food and snacks that are high in calories and find some low calorie snacks and have a lot of small meals every couple of hours to keep the cravings at bay. I used to make a lot of salads at home which really helped. 6. Metallic taste - you will get some metallic taste in your mouth - personally I don’t mind it but I’ve heard some people taking sour candies and such to help. It’s going to be an intense period honestly speaking but you will for sure get through this and hopefully come out better on the other side. Also, a lot of your symptoms will get better so try take advantage of the energy boost and go for walks and some light activities but don’t overdo it. You’ve got this! As always, take this with a grain of salt and of course your neuro’s advice takes precendence over any advice given here :) Good luck!
@AlexanderM Thank you! This really helps me understand what will be happening when it does. I really appreciate your input 🙌👍